2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it's hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election, you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn't get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week - again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

Thank you

With Jamie’s guest blog post last week In Sickness & In Health  it brought me back to thinking about a post I wrote in May 2014 and reblogged in March 2015 called Weathering The Storm . It was good to see Jay’s perspective of things from the side of being a carer, husband and breadwinner because I do feel a tremendous amount of guilt about the way my illness has not only impacted my life but of his also.

It was lovely getting feedback from people who see us in the real world and from those who only know us through the internet. Not that I want or need outside validation to know that I have a wonderful relationship with my husband, as quite frankly I find it incredibly hard to accept compliments or to “see” what others see in us. To find out your relationship is an inspiration to others is obviously very nice but it also feels quite strange. I have never seen either of us as any kind of role model. It is a really weird situation to explain without sounding like an ungrateful twat and that couldn’t be any further from the truth. I am truly grateful (as is Jay) for everyone who took the time to leave comments on Facebook and on the blog post. We were both very moved by the things people wrote, so we want to say thank you for that.

The thing is Jay and I don’t think we are anything special, we just work. We are very similar in our outlook and sense of humour. We both mean the world to each other. Neither can imagine life without the other, when I think of family he and the dogs are it. When something good or bad happens he is the one I want to tell first but to me that is how any relationship should be. I suppose it seems strange because I know we aren’t one of those couples that are constantly doing PDA’s (public displays of affection), we never have. We are by nature quite private people, which is hilarious when you think about it in connection with my blog. However like any blogger or anyone on social media there are things that you don’t share because you still want a level of privacy and to have something that is yours and yours alone.

I wrote a lot about the guilt I felt due to getting sick back in 2014’s Weathering The Storm, things have changed a bit, I still feel pangs of guilt but not on the level I used to. I know that I didn’t do anything to cause my predicament or to deserve getting sick. It is just one of those things that happens. I did feel very guilty last year due to the amount of stress that Jay was under due to my CSF Leak and the amount of time he had to take off work at short notice. I worry about the impact it has on his career and his standing amongst his colleagues yet they were the ones who took the time to praise him for his blog post. That meant a great deal to both of us and reassured me that at least in his work world, he isn’t thought any less of due to me.

I am lucky I have a partner who will stand by me through thick and thin. I know he loves me, he tells me everyday and I tell him the same. We had so many plans before all this happened and it’s only in the last few years we have been making plans for our future again. Until a few years ago I could see no future and no point in planning anything long-term. He has taught me that plans can always change no matter what the situation but it always important to have plans, dreams, aspirations rather than always being focused on the here and now. Even when things were really dreadful last year and I was confined to bed for much of it (due to a spontaneous CSF Leak) we would talk about going on holiday, about fundraising for a new wheelchair etc. Even if those things seemed nothing more than a flight of fancy at the time, they are what kept us both going.

I think a lot of the strength of our relationship comes from the fact we have shared hopes and dreams. We aren’t working against each other but together for common shared goals. A relationship is the biggest feat of teamwork you will ever take part in. We work together because we want to be together come what may. And whilst we have both had utterly crass and insensitive things said to us over the years, as in “leave / walk away, this isn't what you signed up for” or “If you were my wife I’d leave you”, we haven’t taken it personally. Rather we have felt a deep sympathy for the partners of those who have said those horrible things. Wondering if they knew that they were once accident or illness away from having the love of their life abandon them. It never crossed Jay’s mind to leave and if the shoe had been on the other foot, it would have never crossed mine either. When we took our vows we meant them, they weren’t said with our fingers crossed behind our backs in case anything ever changed. We aren’t like that and can’t understand people who are. I really do think those sort of people are in the minority, well I hope they are.

So from both Jay and I we just wanted to say thank you, to everyone who read the blog post and to those of you who took the time to leave a  comment. We read every single one and they all meant a great deal to us. Jay has promised that he will write another piece in the future, again the subject matter will be entirely down to him.

Thank you from us both and of course the dogs.